On September 7, the World Duchenne Organization launched a WDAD documentary that portrays the lives of people living with Duchenne Muscular Dystrophy across the globe and how they are each breaking barriers in their personal lives. Using storytelling techniques, the organization aims to provide insight into the barriers someone living with a rare disease may face, and provide encouraging and inspiring ways to overcome these challenges. The video is directed by Nicoletta Madia and produced by Arimvideo.
We urge everyone to share the documentary with the wider community. By working together, we can create a more inclusive and supportive society for people living with dystrophinopathies.
Theme: Breaking Barriers
The World Duchenne Awareness Day 2023 theme is ‘Duchenne: Breaking Barriers’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this, WDAD supports creating a society that provides equal opportunities for all. This year we organize the 10th edition.
People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. That’s why on September 7th we call on you to take on responsibility and help break down barriers for people living with DMD/BMD. Only together as a society can we create an inclusive society and build a better future.
Some examples of topics aimed at breaking down barriers in DMD include:
Access to care: Ensuring that individuals with DMD/BMD have access to comprehensive and affordable medical care to manage their condition and improve their quality of life.
Accessibility: Ensuring that public spaces, such as schools, workplaces, and community centers, are accessible for people with DMD/BMD.
Advocacy: Raising awareness about the challenges faced by individuals with DMD/BMD and advocating for policies and programs that promote social inclusion and equal opportunities for people with disabilities.
Community engagement: Encouraging individuals with DMD/BMD to participate in community activities and providing resources and support to help them do so.
Employment opportunities: Creating job opportunities for people with DMD/BMD and providing support for them to find and maintain employment.
Inclusive education: Providing opportunities for people with DMD/BMD to attend mainstream schools and participate fully in the educational experience.
For inquiries, please contact Suzie-Ann Bakker, communications coordinator at the World Duchenne Organization.
Join the educational event on Women and Duchenne that will launch on September 7, 15:00 CEST. This event is for anyone interested in how we can create a better future for people living with Duchenne and Becker MD.
This year’s World Duchenne Awareness Day, we are highlighting the various aspects of Women and Duchenne. The educational event is taking place in Rome, Italy, and is accessible via YouTube.
In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on the boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. The genetic mutation is located on the X-chromosome of which boys and men only have one. Women have, in general, two chromosomes, thus have a ‘spare’ gene which still encodes for dystrophin.
In addition to women with DMD, this theme Women and Duchenne includes all women. The women supporting the boys and men with Duchenne, the caregivers, the spouses, the sisters, the clinicians, the scientists and the patient advocates.
The main goal of World Duchenne Awareness Day 2022 is to raise awareness about Women & Duchenne. First, we will give the podium to women, to address their needs and challenges. Secondly, we are providing information about optimal clinical, psychological and social support for carriers. Third, we will put the spotlight on the female caregivers. Lastly, we are highlighting the engagement of strong female scientists, clinicians and advocacy leaders.
Click on the image below to open the agenda in high resolution.
Event Women and Duchenne
Carriers: Women who are carriers of the mutation can have clinical symptoms. This can vary from no symptoms at all to being as severely affected as boys and men with Duchenne MD.
It is important for Duchenne mothers, sisters, and aunts to be tested if they are carriers. Being a carrier can influence their daily life and mental wellbeing. Every Duchenne carrier, showing symptoms or not, need regular medical checks and should receive support.
Mothers: Not all mothers are carriers but all mothers need support and their challenges should be addressed. How to combine being a Duchenne MD mother with raising siblings, having a job, be a patient advocate, fundraiser or a mentor for others? We will discuss caregiver burden, mother love, how to look after other family members, how to look after yourself.
To illustrate what it means to be a Duchenne mother, Nicoletta Madia is interviewing mothers across the globe to collect their experiences. In addition to mothers, we invited a Duchenne sister and wife to share their stories, needs and challenges.
Lastly, we will discuss strong women in advocacy and science. Why did they choose Duchenne Muscular Dystrophy as field of expertise? Why are they so extremely dedicated? We hear from top professors and advocacy leaders in the field of Duchenne and Becker Muscular Dystrophy.
Why you should join
With extensive experience across care, science, policy, inclusion and research, this educational event is offering a unique perspective on Women & Duchenne, and how we can overcome challenges.
To conclude, this event is for anyone interested in how we can create a better future for people living with Duchenne and Becker Muscular Dystrophy. The online event is an initiative by the World Duchenne Organization.
Why for World Duchenne Awareness Day 2022, women are in the spotlight.
In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. This means that the genetic mutation is located on the X-chromosome of which boys and men only have one. Women have, in general, two X chromosomes. This means women have a ‘spare’ gene that is still encoding for dystrophin.
The role of dystrophin
The muscle breakdown is being caused by missing the genetic information to produce dystrophin. This is well-known in the field of Duchenne. A loss of dystrophin is leading to loss of motor functions, difficulties in breathing and coughing, and weakening of the heart muscles. At a later stage, the smooth muscle function may be affected. Additionally, dystrophin is also playing a role in the brain. Although there is still a lot to learn about the exact role of dystrophin in the brain, we see a higher percentage Duchenne boys and men with learning and behavioral issues.
Women can be carriers with or without symptoms. Carriers of the Duchenne mutation can have symptoms in line with those seen in males living with Duchenne.
Women with Duchenne exist. When a woman’s ‘other’ X-chromosome is not existing or not ‘turned on’, she can have exactly the same symptoms and course of the disease. These women have the diagnosis Duchenne MD and should be included when talking about Duchenne.
All over the world there are extraordinary women playing an important role in the Duchenne field, in advocacy, research and care. Their work and impact will be highlighted during WDAD 2022
With a longer life expectancy in Duchenne, a new group is emerging: those of the partners and spouse.
Mothers as primary caregiver
First and foremost: for all mothers, carrier or not, it is important to pay more attention to wellbeing and self-care. Not only by themselves. This should be encouraged by clinicians looking after their sons, friends and family members. A famous quote is: ‘You first have to look well after yourself before you can look after others.’ Many Duchenne mothers miss their regular health checks. In addition to this, research showed they are significantly less fit than other women their age. Having a healthy lifestyle including time for yourself is important for your mental health.
Secondly, carriers, whether they are mothers, sisters, aunts or any other carrier, need regular checks and support. For example for heart function, muscle weakness, and psychosocial issues. Learning difficulties may need to be checked. The intensity of these visits and support depends on how severe the symptoms are.
Women living with Duchenne
There are girls and women lacking dystrophin, having the same clinical features as boys and men. However, girls and women are often diagnosed with more difficulties and delays, because Duchenne and Becker MD are considered a male only disease. Often, women need to explain that they too, can be affected with Duchenne MD. We as Duchenne Community should raise more awareness for this.
Women in Duchenne science and care
The Duchenne Community is blessed with involvement of exceptional women working in the field of research and care for everyone affected with a dystrophinopathy. They are ambassadors and mentors at the same time. They are spearheading the translation of research and care recommendations for families.
DMD Partners and spouse
Over the past decades, life expectancy of people living with Duchenne and Becker Muscular Dystrophy has increased significantly. Young boys are growing up and become young men, and adults. Partners and spouses play an increasing role in their lives. In other words, partners and spouse are becoming a new group in the Duchenne community. We should include their unique perspective.
Goals of World Duchenne Awareness Day 2022
Support mothers as primary caregivers
Acknowledge carriers and their clinical needs
Recognize women living with Duchenne
Celebrate strong female leaders in DMD research and advocacy
Include the perspective of partners and spouse
This World Duchenne Awareness Day, we are honoring and learning from the extraordinary women in the Duchenne and Becker MD field. This is going beyond the carriers and women with Duchenne MD. The patient advocates fighting for new developments, the women organizing support groups and the researchers and clinicians who continue to make a big difference in the lives of everyone affected by Duchenne and Becker MD.
Educational event on September 7
Moreover, on September 7, the World Duchenne Organization will host an educational event on women and Duchenne. During this virtual event, experts share their knowledge, stories and experiences surrounding women and girls in the field of DMD/BMD. The event is open for everyone and registration is not needed.
There are official materials that can be used to raise awareness for World Duchenne Awareness Day. Visit the Download Materials page to access the visuals and texts. All materials are available in multiple languages. In addition to finding the press kit, people can find Did-You-Knows, social media banners, and high resolution logo’s.
For questions and inquiries, please contact Suzie-Ann Bakker:
September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be ‘Women & Duchenne‘.
Awareness raising materials, such as the official press pack, high resolution logos, key visuals and images can be found here.
On 7 September 2021, many activities around the world were organized on the occasion of World Duchenne Awareness Day. Awareness-raising events were hosted in many countries by organizations, companies, healthcare professionals and families. This article summarizes World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.
The 8th World Duchenne Awareness Day was a reminder of the importance of creating opportunities to improve the lives of adults living with Duchenne muscular dystrophy (DMD).
The World Duchenne Organization would like to thank everyone who created and participated in activities that were organized throughout the world. Elizabeth Vroom, chair: “During this extraordinary day, we were happy to see this big movement about the globe and the willingness to take action to achieve the goal of this day. Adults with Duchenne should be able to receive adequate care, have opportunities to live an independent life and to participate in society.”
Online Event on Adult Life & Duchenne
The World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from 59 countries to listen to stories and experiences surrounding DMD and adult life. The aim was not only to inspire and empower young adults with Duchenne and their families to think and plan for the future, but also call for global action to everyone involved to facilitate adults with Duchenne to live a full life including, social participation, jobs, independence and provision of optimal health care.
Apart from experts sharing their take on adult life, multiple interviews highlighted the perspective of adults living with Duchenne. In addition to care, other important aspects that were discussed included mental wellbeing, future perspective, and disability rights.
Consensus Guidelines for Adult Duchenne Care
With increased life expectancy for people living with Duchenne MD, new medical needs need to be addressed in international standards of care. The Journal of Neuromuscular Diseases published on WDAD the Consensus Guidelines for Adult Duchenne Care. Catherine Woodhead, Chief Executive of Muscular Dystrophy UK said: “I am extremely pleased that Muscular Dystrophy UK has been able to fund and support the development of the first published best practice standards of care for adults living with Duchenne muscular dystrophy. We hope that the pioneering work of Professor Ros Quinlivan and the Adult NorthStar Network will help to improve the consistency of high quality care for adults with Duchenne in the UK, but also across the world as these recommendations are adopted in other countries.”
As the evening set in on September 7, famous buildings, landmarks and monuments were lighting up in red to raise awareness for the rare muscle wasting disease. The Niagara Falls (Canada), Torre Glòries (Spain), and Legislatura (Chile), are only few of the many red landmarks. Next to a wave of red light, some of the initiatives included the projection of the logo, such as on the Stedelijk Museum (Netherlands).
The World Duchenne Organization is planning a series of webinars regarding adult life in Duchenne. Each webinar will focus on a specific care aspect. The Duchenne Care Conference that is taking place in April 2022 will be dedicated as well on Adult Life & Duchenne.
World Duchenne Awareness Day
World Duchenne Awareness Day has been celebrated annually by the Duchenne and Becker community since 2014. It aims to raise awareness and inspire action to improve life quantity and quality of people living with Duchenne and Becker muscular dystrophy. Through World Duchenne Awareness Day, the World Duchenne Organization works to highlight important aspects that deserve more attention.
Today on World Duchenne Awareness Day, the Journal of Neuromuscular Diseases published the consensus guideline for adult Duchenne care. The publication can be accessed by clicking on the link below. We are grateful for professor Ros Quinlivan for taking the lead on this, and would like to thank the Adult North Star Network (ANSN) and Muscular Dystrophy UK for their contributions.
There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology.
Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.
The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom, and is available with live Spanish interpretation.
On September 7, the World Duchenne Organization is organizing a live event from 14:00 to 16:00 Central European Summer Time. During these 2 hours, various experts will share their experience and knowledge on adult life with Duchenne. Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.
The number of adult men living with Duchenne Muscular Dystrophy (DMD) is growing bigger every year. This can largely be attributed to better medical care, such as supportive ventilation and the use of preventive (cardiac) medication. These men want and deserve to live their lives to the fullest. This means they have the right to receive adequate care, have opportunities to live independently and to participate in society.
However, the medical profession and society are often not ready to facilitate this. While knowledge of optimal care for pediatric patients has expanded considerably and the organization of care has improved for this group, there are no care guidelines so far for the adult men.
Only very few studies are being done to gain evidence on optimal care. Care is often fragmented and there is a lack of specialized medical teams/centers for adult DMD care. In addition, educational institutions and employers are often not equipped with the necessary facilities and support systems, and too many facilities are just not accessible, leading to extreme frustration.
Although the first papers describing the challenges as seen by this group were published more than 15 years ago, and since then documentaries have been produced and workshops held on these topics, a lot of work still needs to be done to improve the situation for adults with DMD around the globe.
“On September 7 during World Duchenne Awareness Day 2021, we ask you to act and start or accelerate activities to provide appropriate support and improve accessibility. By doing so, adults with DMD can indeed live their lives to the fullest, receive adequate care, and be given the opportunity to live independently and to participate in society.” – says Elizabeth Vroom, chair of the World Duchenne Organization.
The event will be held in English with an option for simultaneous interpretation into Spanish and Ukrainian. The online event will be accessible to everyone who registered. The event will be recorded and the video subsequently made available.
Apart from being of interest to caregivers and people living with Duchenne MD, the event will be of particular interest to clinicians and other healthcare professionals, employers interested to hire people living with a disability, and government institutions.
September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be ‘Adult Life & Duchenne’. An online event accessible to everybody was taking place on September 7.
ADULT LIFE & DUCHENNE
Over the past decades, life expectancy of individuals affected by Duchenne MD has increased significantly, and adults with Duchenne are not an exception anymore. Adult life with Duchenne comes with new challenges and opportunities as well as with new medical issues. This World Duchenne Awareness Day, we are globally advocating to create opportunities for young adults and adults with Duchenne to live their lives to the fullest.
WORLD DUCHENNE ORGANIZATION
On September 7, the World Duchenne Organization will be hosting an online event. During this event, experts share their stories and experiences surrounding DMD/BMD and adult life. With this, we aim to inspire and empower young adults with Duchenne and their families to think and plan for the future.